Kidney cancer is the focus here, but I can’t resist writing about the empowered and determined lung cancer patients who changed the rules–the NCCN guidelines–in treating their cancer. With this, there is support for treatment for their newly established metastases which was previously lacking. Translation for the patient was, “It’s come back, so just go home. End of story.”
What does this mean for kidney cancer patients, or for others? For that matter what does “oligometastases” mean anyway?
” Oligometastases are defined as 1–5 distant metastases that can be treated by local therapy to achieve long-term survival or cure.”
Earlier, some doctors felt that there was no reason to treat a patient who was initially diagnosed with metastatic disease. If the cancer had already metastasized, nothing that could be done, not even the removal of the primary tumor. Oddly enough, patients often got no treatment and the self-fulfilling prophecy worked again.
We kidney cancer patients know better. (My 10cm tumor and the lungs full of mets would have NOT been treated by many doctors.) Removal of the primary tumor can have real benefit, even when there is no treatment for the metastases.
Similarly, the emergence of mets post-surgery was also seen as a “game over” by many doctors. The “got it all” surgery that was welcome news was suddenly a forgotten phrase. How many sad visits a year or two after of misplaced confidence? Kidney cancer will come back far too often, suddenly emerging near the old tumor or in some of the favored spots. With kidney cancer, that is the lungs, bones, adrenal gland and the brain.
These new mets, generally in the area of the primary, are those oligomets. Hard enough to say, and harder yet to be told that the docs will do nothing–because the guidelines say it is not worth it. That was the situation for non-small cell lung cancer patients with new mets.
But these cancer patients were NOT having that kind of non-help!
They gathered all the data, showed the value of going after these mets and convinced the NCCN to make significant changes in their guidelines. Now doctors and the insurance people cannot deny these treatments on the basis of these guidelines.
Patients helping patients, patients helping doctors, patients helping create better guidelines, patients living longer…might be a trend we can emulate.
Keep in mind that most doctors and insurance companies want to use treatment guidelines based on some acceptable medical standards. One guideline comes from the National Comprehensive Cancer Network. This establishes the working rules for what kind of treatment or monitoring is thought appropriate for any stage of cancer. For example, the treatment for a Stage I tumor is quite different from that of a Stage IV tumor. There are guidelines for shifting to new medications, and for monitoring of primary tumors or mets after surgery.
Since kidney cancer most often metastasizes to the lung, I monitor some of their sites, and was thrilled to see this. Power to the patients, people!